Category Archives: human rights

In Emma’s RPM session yesterday with B. on the topic of discrimination, Emma wrote, “Autism voices have been silent.” (Emma initially typed “silenct and then she edited that to “silent”.) B. encouraged her to write more, asking her what she suggested. Emma wrote, “take time to try and learn from us instead of staring at us like we are garbage.”

When she wrote the word “garbage” I felt sick to my stomach. This, from my twelve-year-old daughter.

I remember when my father would call me into his home office to scold me for my latest infraction. I remember the shame I felt. I still remember the tingling feeling of rebellion mixed with self-doubt when I noticed the disapproving stare of a stranger upon seeing my outfit – a crop top and pair of cut-offs that I’d smuggled into my backpack to wear to go shopping with a friend after school. There was shame then too. But stares like I’m garbage? No. I don’t know what that’s like and yet, my twelve-year-old daughter does. Twelve years old. Evidently she knows this feeling all too well, as there was no hesitation when she wrote that sentence yesterday. It wasn’t like she had to stop and think about her answer. She didn’t pause before pointing to the letter “g”.

“take time to try and learn from us instead of staring at us like we are garbage.”

B. had been talking about Martin Luther King. She had spoken of the civil rights movement and quoted a few things Martin Luther King said. Emma immediately wrote about autism. No hesitation there. I can’t really console myself with the idea that racism and discrimination are no longer an issue in the United States and therefore the prejudice Autistic people encounter will change any time soon as well. The language has been cleaned up, people know not to use certain words, but the feelings, the feelings of bias, the violence that prejudice and oppression encourage continues.

“take time to try and learn from us instead of staring at us like we are garbage.”

When my daughter was diagnosed, we heard about Autism Speaks. Their message supported everything else we were reading and hearing about autism, so I didn’t spend much time thinking about what they were saying or who they were involved with or even what they were doing with all the money they received. In fact, we gave money to them during those early years. When friends and family asked who they should donate money to, I encouraged them to give to Autism Speaks.

“Autism Speaks has a long and continued pattern of exclusion of Autistic voices from its work on autism. As an organization without a single Autistic person on its board of directors, Autism Speaks is the last group our nation’s leaders should be entrusting with the creation of a “national plan to address autism”. ~ ASAN (Autistic Self Advocacy Network)

“No reasonable person would dare suggest that an organization comprised entirely of men represents women’s interests or that an organization led entirely by white people represents the interests of people of color, yet the same standard evidently does not apply to disability organizations despite the existence of many cross-disability and autism-specific organizations led by actually disabled people.” ~ Lydia Brown, Autistic Hoya

I didn’t know.

“Only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services.” ~ ASAN, Before you Donate to Autism Speaks..

“Their slogan is “Autism Speaks to Washington.” It is neither “autism” nor Autistics who are doing the speaking, though.” ~ Paula Durbin-Westby

I didn’t know.

Autism Speaks has aligned themselves with the Judge Rotenberg Center, (read Autistic Hoya’s: An Unholy Alliance) a center that uses electric shock as an “aversive”. The Judge Rotenberg Center continues to accept “students” despite this video footage showing a young man being tortured.

For more about the Judge Rotenberg Center read Autistic Hoya’s post with dozens of links ‘here‘.

Bob and Suzanne Wright, whose grandson is Autistic created Autism Speaks in 2005. Since then Autism Speaks has become one of the most influential autism organizations in the world. What Autism Speaks does and says is often the first thing parents and people reading about autism hear.

“If three million children in America one day went missing – what would we as a country do?

If three million children in America one morning fell gravely ill – what would we as a country do?

We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.

We’d leave no stone unturned.

Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.” ~ Suzanne Wright’s A Call to Action

The problem with this kind of rhetoric is that it is not a “call to action” it is a call to terror. Terror that our children are “missing,” or have been “stolen,” or that if we are not careful any of our children will be “taken away” from us. It furthers the misconception about autism and likens it to a predator, a kidnapper who will steal our children from our loving arms.

This is not awareness, this is propaganda.

Autism Speaks is responsible for a number of public service announcements which show screaming children and their exhausted parents who talk to the camera about how hard it is to have an autistic child while those same children are present. I might have been one of those parents not so long ago. In fact I allowed a camera crew to come to our home several years ago and film us. The short film showed us sitting on our couch talking about our daughter as she sat beside me, (not realizing my daughter understood everything that I said, this is yet another of my many regrets) intercut with clips, I provided them with, of my daughter in full melt down. I have since asked that our interview and all clips of my daughter be removed and I am grateful they respected my wishes. The parents in the Autism Speaks videos are not so fortunate.

So many of us have supported organizations we thought were working toward positive change. We believed they were helping us, our children and Autistic people. We thought they had our children’s best interests in mind. We believed they were doing good, only to find we were wrong.

“Please try to remember that what they believe, as well as what they do and cause you to endure, does not testify to your inferiority but to their inhumanity and fear.” ~ James Baldwin from The Fire Next Time

If there is one thing I want my Autistic child to know, it is this idea written by James Baldwin. He was writing about race, but his words apply to any who have been on the receiving end of prejudice.

I think about my father a great deal. A proud, athletic man who broke his back in a horse back riding accident which eventually forced him to rely on a wheelchair to get around. My father used to call me every Sunday. We would chat about things that interested him, the weather, his garden, his cat, the dogs, the horses. He would ask me about what I was working on. He was tremendously supportive of my career. I was battling my own demons, demons of my own making, but demons never-the-less that I rarely discussed. I would ask him how he was, but he would always answer, “I’m still here.” I knew that I would have to call my mother to learn about his physical well-being if I wanted anything more in depth. He never complained.

One day I told him I was tired of him always saying he was fine, I really wanted to know how he was. I wanted him to tell me the truth. He said, “You want me to tell you about the constant pain I’m in? You want me to tell you about how my bodily functions are slowing down and what that’s like? Is that what you really want to know?” I remember pausing for a second and feeling confused. And then felt terrible for my hesitation. What I really wanted was for him to be fine. I wanted him to be happy and energetic and well. I wanted him to feel good and he did not. He did not feel happy and energetic. He was in pain. Physical and emotional pain and a lot of it. At the time I wanted to be the one who would change his circumstances. I wanted to be able to make him better. I wanted to save him from his pain. But I couldn’t. I couldn’t.

When my daughter tells me she wishes there was a cure for autism, I feel that same stab of pain. This is the price of our inhumanity. I think how society and my past actions have done this to her. All those people, the media, the articles, the doctors, the therapists who spoke of her neurology as a terrible thing, a neurology that is not understood, that most see as inferior. And I blame myself for having bought into this belief for so many years. The idea that if I could just find the right pill, the right bio-medical intervention, the right therapy, we would successfully alter her brain and make it so she could talk and have conversations with us, so she could learn to “pass” if she wanted to, so that she’d at least have that option if she chose it, despite the devastating price she would have to pay to achieve this. So that she’d have a chance.

But she couldn’t achieve this goal and I learned to stop asking her to. I found other methods, not therapies, not treatments, but rather ways to teach her, ways to work with her specific neurology, and I keep practicing these methods because I have seen how others who created them and have trained in using them are able to converse with her through writing. While I do all that, I keep telling her and showing her that she is loved and of value. She is worthy and perfectly imperfect and deserves to be treated kindly and as the intelligent, sensitive, talented human being that she is. She has as much right to be in this world as anyone else. She is equal to her peers not less. Being indistinguishable is not a goal.

My daughter’s neurology is not inferior. Those who believe this are wrong. My daughter is no more inferior than I am. She has challenges, they may feel at times insurmountable to her, but we as a society can make her challenges easier. It is our inability to lessen her challenges that is at fault, not her neurology. It is our responsibility to challenge our views, to call each other out when we see injustices being done, to treat each other with the same respect and care we would have others treat us. We must never give up. We must never allow ourselves to fall into lethargy or the false believe that we are better than anyone else. We are not. We are human. Imperfect. We need each other. We need to push each other to do better. We can do better. We must do better for our children, for this world, for all humanity.

Jen at Down Wit Dat is doing a blog hop. It is open to all blogs in the disability and special needs communities: self-advocates, allies, parent advocates, and others are encouraged to share posts.

Her doctors fear she will have permanent brain damage as the result of carbon monoxide poisoning.

The mother is charged with attempted murder.

We are told the daughter was aggressive.

We are told she was Autistic.

I cannot stop thinking about Issy. As I write this, she is lying in a hospital bed unconscious. I cannot stop picturing a photo of her laughing, her blonde hair glimmering in the sunlight, her head thrown back, a look of joy on her face.

Richard and I finished up our “staycation” by watching the Oscar nominated short documentaries at the IFC Center (Independent Film Channel) yesterday. As I watched them I thought about the documentary I would most like to see. It would be about Autism and Autistic people. It would go back to Lovaas and Hans Aspergers, then Bettelheim, the evolution of what we thought we knew about Autism and those who are autistic and the ways in which we thought to “treat” it. It would cover the move away from institutionalization to the current, though still negative thinking regarding the neurology we call Autism. The documentary would have dozens and dozens of Autistic people of all ages, non-speaking, speaking, sometimes speaking, those who have careers, to those who are unable to work to those who work for themselves. It would look at functioning labels and address why those labels work against everyone, it would cover the various myths surrounding autism and why those myths are ultimately destructive and limiting. It would be a collaborative effort of Autistic and non-Autistic people. It would be an example of what we can create if we work together, regardless of our neurology. That’s the documentary I would like to see made.

Short of making such a documentary myself, I won’t hold my breath, though. The whole idea of neurodiversity is considered radical and even threatening by many. I understand that. I understand that it is not a popular or particularly good way for organizations to raise money, especially those whose main goal is to fund research for treatments and cures. I understand that change happens slowly. I understand that any movement involving the rights of a minority moves slowly before it is embraced by more than a radical few. But I also understand the power of good film making and that it can reach many more than any written piece could…

If you could see a documentary about Autism and Autistic people, what would it cover?

Someone spent time creating this page on Facebook… no one stopped them until countless people had seen it.

This page has now been removed. I post it here because the hatred, the sheer toxicity and venom that the person who created this page had to have felt to create this page is what so many of my friends and I have worried about and feared. This screen shot sums up so much.

I have spent several hours writing and deleting my thoughts on this. I have decided I cannot write anything more because I have no words. I have nothing to offer.

I used to work at an ad agency. One of the first things I learned was that there is one emotion that motivates people more reliably than any other. Fear. Fear compels people to do a great many things they might not otherwise do.

Once we’ve become convinced that something is worth fearing it is extremely difficult to reverse. When we speak of Autism using words and phrases that cause us to fear Autistic people, we are doing tremendous harm in the short and long-term to that population, harm that will be very difficult to reverse. Convincing people to feel fearful about something or someone is one of the easiest things to do. Convincing them, once they are convinced, that it was all a “false alarm” is extremely hard. So when those first news reports came out linking Aspergers with the shooting at Sandy Hook Elementary School, it only took an unethical few to do tremendous damage to an entire population of people. Despite the fact that if you google “Aspergers and violence” the first dozen pages that come up are articles stating that there is absolutely NO connection between Aspergers and violence. And yet, my Autistic friends and I are terrified.

I am frightened for my Autistic daughter and for those I love and care about who are Autistic. I am frightened by what people will assume and how they will then treat those they assume are Autistic. I am frightened for my friends who are Autistic, will they be safe? Will a non autistic person hurt them, say cruel things to them, treat them differently because they fear “autism” and therefore “Autistics”? I am frightened even though the truth is neurotypical people are far more likely to commit acts of violence than Autistics. Watch these videos on Youtube ‘here‘ and ‘here‘. Videos showing Autistic and disabled people being tortured by others. Read these reports ‘here’, ‘here‘, ‘here‘ and ‘here‘ about the systematic abuse of Autistic people, abuse that continues unabated all the time.

It is WRONG to condemn a group of people, people who have suffered at the hands of those who now accuse them, a people who have been marginalized, some of whom cannot defend themselves because they do not speak and have not been given the means to communicate effectively through any other means. It is important that you know. It is important that you understand the ramifications of connecting autism with murder. I want you, no, I need you to understand why the words we use, the constant stream of negativity in relation to autism is causing untold damage to my daughter, to your daughter, your son, your Autistic child, to their futures, to the people I love, to my friends, to all who are Autistic and have had to deal with exactly this kind of prejudice their entire lives. It has to stop. It has to stop.

Children were killed, murdered. The horror is unbearable. But to add to an already heinous act by targeting a group of people and making it about them instead of what has happened, is adding more pain and agony to more children’s and people’s lives. Innocent people. Innocent children. Don’t we see that? Can’t people see we’re making it worse? We aren’t ensuring our children will be safe with these beliefs. We aren’t making the world a better place with more prejudice, bigotry, false assumptions, and our fear. Our fear is what drives us to conclude that we are fighting a false enemy. Our fear is what compels us to hurt, lock up, institutionalize, condemn and torture. Our fear is what causes us to commit acts of violence against those we’ve deemed violent. Our fear…

*A version of the following was sent to me a few weeks ago. This is about women fighting for the right to vote, but it could be the battle engaged by any group in the minority, including those who are Autistic fighting for the right to have a say in the policies that ultimately harm or help them. It is the same story, told over and over again. This post was inspired by Lydia Brown’s recent post, Protesting Autism Speaks on her blog Autistic Hoya where she recounts the response she received as she and others offered ASAN (Autistic Self Advocacy Network) flyers to Autism Speaks supporters and asked, “Would you like to hear from Autistic people?” only to be told “No” over and over again.

Less than 100 years ago women did not have the right to vote.

The 19th Amendment, ratified August 18, 1920, granted women the right to vote. Prior to that women marched and picketed as a way to bring attention to their cause. These tactics succeeded in raising awareness, but were often met with massive resistance and brutality.

On November 15, 1917, known as the “Night of Terror” when the prison warden at the Occoquan Workhouse in Virginia ordered his guards to teach a lesson to the suffragists imprisoned there because they picketed the White House for the right to vote.

By the end of the night, many were barely alive. Forty prison guards wielding clubs and with their warden’s blessing went on a rampage against the 33 women convicted of “obstructing sidewalk traffic”.
One of those women was Lucy Burns. They beat her, chained her hands to the cell bars above her head and left her hanging all night.Dora Lewis
They threw Dora Lewis into a dark cell, smashed her head against an iron bed, knocking her out. Her cellmate, Alice Cosu, thinking Lewis dead, suffered a heart attack. Additional affidavits describe the guards grabbing, dragging, beating, choking and kicking the women.

Alice Paul
Alice Paul began a hunger strike so they tied her to a chair, forced a tube down her throat and poured liquid into her until she threw up. She was tortured for weeks until word was smuggled out to the press.

Edith Ainge

Voting is our right. It isn’t always convenient, we have to take off early from work, find childcare to watch our kids, stand in long lines, but it is our right. A right our grandmothers and great grandmothers did not have. It’s easy to take for granted that which we have grown up believing is a given. But it wasn’t always our right, and while it is doubtful it could ever be taken away, there are many in this world who still do not have that right even today.

Helena Hill Weed – Serving a 3-day sentence for carrying a banner saying, “Governments derive their just powers from the consent of the governed.”